Our New Normal
After a year of no "real" sleep and dealing with new situations that arise every day, life wasn't just day by day, it was minute by minute. Often dealing with the frustration of a child who is unable to communicate is just pure hell. The constant screaming shatters any semblance of calm. Frequent breaks to step away for relief are necessary to maintain a sense of mental tranquility.
I kept asking why He allowed this to happen to my little boy. I was angry at God. It is a horrible cycle of frustration, anger, guilt, and depression. Fortunately, I didn’t have the luxury of feeling bad for long because auto pilot would kick in and remind me that I had to determine to get through this and only God could help me do it. I'm not just saying that because it sounds noble or because it is the "Christian" thing to say. I truly believe it. It's just the human side of me forgets sometimes…ok...maybe a lot of the time. And then I come to my senses, and there He is just waiting for me to depend on His strength.
I never knew how much patience is needed to raise a special needs child. My mother used to say, "Don't pray for patience, pray for understanding." So I did. I was praying, asking God to help me understand what it was I needed to do to get through this. Looking back on Beckett's first year was an eye opener…I had learned many small invaluable lessons of life. The small things you do are really stepping stones to a livable and purposeful life. To this day I struggle with my purpose. I'm a proud mom of 5, a wife and a teacher, and still it seems that life throws things at you that you never expected. In a flash, you can lose the focus of your responsibility to a child who utterly dependent on you.
My purpose changes daily. To keep up with my child’s ever evolving needs, I am learning sign language, impersonating physical and occupational therapists, and as a result I am far more in tune with the everyday challenges of special needs people. My compassion and empathy is foremost as I observe those who cannot do for themselves the most menial task.
I tend to come back to a statement that was told to me by a very wise seasoned educator I work for. As I described some of my daily struggles, she said "Monica, God gives us a new normal on occasion, we must trust Him to get us through it and find ways to modify." She was right, I keep changing and adjusting to my "New Normal." Thinking like that helps me get through the hard times and knowing that it's only temporary helps because the next "New Normal" is just around the corner. Beckett himself has a new normal every day. Every milestone he makes is his new normal. We are all on this road together but his path is bumpier than mine.
The second year of Beckett's life was full of uncertainty. He was now in therapy through ECI (Early Childhood Intervention) and making small motor skills improvements. He began using a walker that helps lower body muscles develop. His therapist, an ex-marine, with a demeanor and motivation techniques that do wonders. He is a stubborn, bull headed little boy and a bit spoiled. Sometimes I thought she was too tough, but I understand that higher standards are necessary for him to aim towards. Just because he was slow, didn't mean he couldn't learn. Repetitive commands and hand-over-hand demonstrate just what he can do on his own.
With concerns about motor development came concerns about cognitive development. He had an occupational therapist and a play therapist who worked with him weekly. They taught him to hold a cup, turn pages of a book, and to use a crayon and other simple motor tasks. A normal toddler typically imitates behavior by watching someone with a toy. Beckett was not interested in toys or even in watching cartoons on television. Most of the time he wandered aimlessly around. It seemed like he was in his own world, indifferent to the physical world he actually inhabited. He was on a different level than typical children. At least that is what my "gut" was telling me.
Before long we became concerned about his ability to learn. Processing a simple task took him a long time. Not just minutes, but sometimes days of repetition. To serve as an echo chamber, I would repeat the same word a hundred times a day. As a result, I think I dreamed about "more" and "juice" and "milk" for months after. Frustrated and discouraged I often wanted to quit. But God knew what He was doing because just when I wanted to give up, relief came when Beckett would make a sign or say a sound that was close to the word of the moment. With effort, after his first two years Beckett had retained about 5 words he signed or sounded.
This required another avenue of cognitive investigation and so began online research and contact with cognitive specialists. But no one had definite answers. I struggled with the idea of him not ever being a productive independent person in society. Who would take care of him if something should happen to my husband or me. Would he be dependent on my older children? Would my extended family be able to provide the time and therapy he needed? I had to let go of those thoughts and believe that God had a plan to take care of him and that I would be included in that plan. With worries like these, depression was a constant visitor. But thankfully sadness was short-lived because my brilliant boy would do something unexpectedly encouraging, which would signal a return to hope and promise. It was going to be ok.
Never will I forget an afternoon that gave much-needed hope and renewed faith that God listens to prayers. One afternoon, off I went to pick up the twins from daycare, and there was Beckett sitting looking outside the glass door that led to the playground. He turned and saw me walk in and smiled…a big smile. He pulled up on the door handle and took a step. First one step, then another and then another as he kept walking all the way across the room to me. I dropped to my knees, crying. I grabbed and hugged him so close. To see my little boy walking was extraordinary. His teacher, Ms. Claudia, also wept. Her sainted efforts were also a part of the many people helping him. The news and excitement spread throughout the building and all his former teachers came to see The Magnificent Walking Boy. He was progressing! After months of prayers God had heeded the call. Beckett was walking at 22 months, exactly two months before his 2nd birthday. It was a moment of pure joy that will forever live in my heart.
These glorious moments – precious few and far between – keep me going when I feel the pull of despair.
The year Beckett turned two was the most stressful since we learned of his handicapped milestones.
Our pediatrician referred Beckett to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric neurologist. The doctor expedited an appointment for us. Instead of the six- to nine-month wait we were seen within three months. In the meantime, we kept chugging along, going to therapy and working with him at home. He was making very little progress and it seemed that new skills were coming at a snail’s pace. At times I cried myself to sleep. Some nights I would get barely 3 or 4 hours of sleep and then work the next day running on fumes. The emotional toll was also showing at home and at work. I needed answers! I was growing impatient with a simple answer to our question that never came. When will a doctor tell us what to expect in Beckett’s future.
At long last we got an appointment to see a doctor at the Blue Bird Clinic. It was a relief just to be in the waiting room. But that feeling soon faded into worry and more anxiety. I showed up with my husband, Beckett and Pyper, his twin in tow. We waited in an exam room with two chairs, a patient table, and a computer. You try keeping fussy 2-year-old twins occupied for 30 minutes in a sterile examination room…I dare you. FINALLY a knock at the door and a woman peeks in and introduces herself as the Physician's Assistant. I was glad we were tended to, but disappointed it wasn't the Main Man neurologist.
I should be grateful but the frustration of unanswered questions had gotten to me. After the introductions she was taking detailed notes and making close observations of Beckett while he was itching to get out of there. The anxiety level rose as she recommended genetic testing and an MRI under sedation. Several genetic tests, I knew, were for rare disorders that could cause a child to have fatal consequences or that would require round-the-clock care for the rest of a child’s life. These tests were suggested merely to rule them out. Because some of his symptoms were associated with these disorders the question of affliction lingered, and we needed to know one way or another. The genetic test I feared most was Rhett’s test. This is a fatal genetic disorder that, however mild, can reduce a victim’s life to 10 years. The other tests scheduled were for Fragile -X, along with about 129 genetic metabolic disorders and a chromosomal karyotype. Aside from a dreaded positive result, my husband and I cringed at the thought of how much these tests were going to run and the very real prospect that the insurance company would deny claims.
We waited almost 3 torturous months for the genetic results to come back. During this time I spent untold hours researching genetic disorders. I was looking for answers that never seemed to come. I would cry at school and cry at home praying for the tests to be normal. Meantime, we were still waiting to get a MRI. Beckett was continuously sick with a cold or ear infection. After 3 attempts to get him an appointment at Texas Children's for an MRI, we succeeded. But I hated that day too. He had to be put under anesthesia for a conclusive view of his brain. I myself almost passed out when they gave him the drugs that put him under. My husband was holding him while they administered the drugs. He fell limp, which was painful to watch. It was a successful scan and the results would be ready in 3 days. Again, 3 very long days.
That day finally came, the moment of truth! We had the results of both the genetic testing and the MRI. The PA called and said all the genetic tests were all NORMAL! I felt my chest sigh in relief. The neurologist looked over Beckett’s records and related some of the best news I’d had in a long time. He said that there was a discrepancy in his MRI. He explained that the myelin, or white matter in his brain was at 50%. A typical 24-month-old has approximately 90%. Myelin is the plastic covering that insulates an electrical impulse wire. This disorder makes it difficult for him to make connections. My heart then fell again. The emotional roller coaster is exhausting. Hope then returned when the doctor said that with extensive therapy and lots of patience, there is an 85% chance that Beckett would be fully functional by the age of 6 or 7. This mother dreams of that hopeful prognosis every day. This is a potential result I won’t forget and I pray that this time – this time – the doctor is right.
We will see, because there are changes every day, good and bad, but for now we choose to hold the most positive light before us.